Round 4, surgery update, and complications
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Allison’s Cancer Journey
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Allison’s Cancer Journey
This update is one I’ve struggled to write. I don’t want to write it, because I don’t want any of this to be real. But here we are, and we have to face it.
First off, Allison’s last round of chemo went relatively well. Her nausea was much better controlled both in the hospital and once we came home. However, it severely suppressed her immune system, and we were admitted again last night after she developed a neutropenic fever of 102.4.
The team measures immune function using a calculation called the ANC (absolute neutrophil count). In a healthy child, that number should be above 1,500. In a healthy adult, it typically ranges from 2,500–6,000. When we arrived at the hospital last night, Allison’s ANC was zero. This morning it has improved to 20, which is a good sign but her fever is still off and on. We need to be fever free for at least 24 hours before going home.
Her platelets are very low, so she received a transfusion this morning. Her hemoglobin is also just one point above transfusion level, so we are monitoring that closely. All of this is a direct result of chemotherapy suppressing healthy blood cell production. On top of that, the mouth and throat sores have returned with a vengeance, so she is feeling pretty miserable overall. Once her immune system recovers, the mouth sores usually get better pretty fast. We are starting a continuous pain pump and IV nutrition since she has not been able to eat for several days. She has to have pain controlled enough that she can eat and drink adequately before she can go home. We are hopeful that fluids, antibiotics, and supportive care here will help her move past this hurdle quickly. She really wants to be home in time to celebrate Valentine’s Day!
It also seems like everyone at home is sick right now. This season has not been gentle on our family, and we would deeply appreciate prayers for health for all of us.
Last week we met with the surgeon to discuss options. Because the portion of Allison’s tibia containing the tumor must be removed, along with part of the fibula and some surrounding tendons, we were presented with three options.
The first option is replacing the removed bone and tendons with donor bone/tissue. This preserves her foot, but the new bone is fragile, since it’s not actually living, and the joint must be fused, which significantly limits mobility. The second option uses metal to replace the bone. While the joint is not fused, it still does not function normally, mobility remains limited, and the joint can be unstable. In both cases, high-impact activities like running, snowboarding, or any kind of sports would be strongly discouraged, and healing can be prolonged and complicated during chemotherapy.
The third option is a below-the-knee amputation. This means losing her foot and ankle, but it would allow her the greatest long-term mobility since there is such a variety in modern prosthetics designed for all different kinds of activities. For this option, the limb is removed about 18cm down from the knee so that she would still have good mobility in her knee but she would also have plenty of options for prosthesis. The doctor said the downside is that she only has one foot so if she, for example, wakes up at night and needs to use the restroom, she can’t just walk there. And while she is young it’s easier to get around, but as you get older hopping or moving around on one foot becomes more difficult.
The surgeon told Allison she didn’t have to decide right away. However, without hesitation, she chose option three. She does not want to live with limitations on her activity. While I am grateful for her clarity and courage, it is still heartbreaking to stand at this precipice with her. Surgery is scheduled for March 30. She likely will not be able to walk for about four months afterwards, while swelling decreases and a custom prosthetic is made and fitted.
I never imagined analyzing our home for wheelchair compatibility or figuring out the best way to navigate a one-inch shower lip with one leg. Thinking about how someone can drive with your left foot, or how to load a wheelchair with one hand into the car while balancing on one foot. There is so much to consider. But Allison continues to face each hurdle with remarkable strength and grace.
One of the greatest challenges isn’t just the cancer, the chemotherapy, or even the upcoming surgery, it’s the emotional weight of it all. Allison has been struggling emotionally, and we are praying specifically for JOY. That she would feel peace. That she would experience genuine moments of happiness each day. That she would feel lifted up enough to endure what’s in front of her.
Please also pray for her sister, Maliya. Alli’s little brothers don’t fully understand what is happening, but Maliya feels the full weight of it all, while also carrying the demands of very rigorous school courses and extracurricular demands. Please pray with us that she would have peace, assurance that her sister will be okay, and the courage to walk alongside Allison through this. And please pray for us as parents, that we would have patience, wisdom, steadfastness, and courage to guide Allison through this season and whatever lies beyond it. 💕
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